Monday, November 30, 2009

Happy Seven Months, Lily!

This time last year, I was reeling from finding out that the baby I was pregnant with had this condition, Trisomy 18. If memory serves me correctly, the final amnio results were in on the day before Thanksgiving. This time last year, despite that devastating news, I had so much to be thankful for.
It's twelve months later, and I find it remarkable--the heart's ability to heal. I still remember the afternoons spent lying on the bed, unmoving. The tears. The prayers to God, Please let me miscarry. A broken heart.
And today, Lily is seven months old. What a difficult seven months it has been. What a wonderful seven months it has been.
We found out last week that Lily only has one kidney, not a pelvic kidney as was first thought. We also found out that her gall bladder is showing something that the doctors aren't sure what it is. Stones? Sludge? In a child, it's not uncommon. In an infant Lily's age, it is. She's going to see a nephrologist this week and if the nephrologist wants a CT scan on her kidney, she'll also have one on her gall bladder at the same time. Otherwise, everything looks fine. Thank you, God.
Today, Lily had an eye doctor appointment. The doctor made a comment that Lily's eyes are the best eyes she's ever seen on her Trisomy patients. I don't know exactly what that means, but it sounded great! Lily is far-sighted, but that might correct itself within the next six to twelve months. Lily does have small nerves, the doctor said, but she has patients who deal with that. Her concern is the way Lily's brain receives her eyes' information. Lily perceives contrasts. She will stare intently into your eyes. She will "track" you if you move from side to side, but she has no interest in toys. The only toy she will "track" is the fish in her swing.
Sleep is another issue. The child has her days and nights mixed up or something. She's so calm and wants to sleep during the day. Come night, though, and she's fussy. She falls asleep around 9:30 or so, but as soon as our heads hit the pillow, she's awake. . .and there she stays. We've put a radio in our room, and I think that little bit of noise helps, and we're now sleeping with the bathroom light on (Boo! I like to sleep in pitch black!). Believe it or not, that seems to help as well. Plus, 9 times out of 10, when I put her in her bed, she wakes up. It's like she does not like her crib. Last week, she wouldn't go to bed until 3 in the morning. Now, I do not like that I do this, but I'm in survival mode due to lack of sleep, so I have been letting Lily sleep in our bed.
But what I've noticed is that when I feed her in the rocking chair, and she falls asleep, when I get up, she stiffens, and then has trouble going back to sleep. If it's the 2:30/3:00 feeding, she's awake until 5 or 6. We went out of town this weekend, and Lily started out in the Pack N Play, but when I fed her in bed, it was too uncomfortable to sit up, so I fed her lying down. She stayed relaxed and slept pretty well. At least she didn't stay awake for two and a half to three hours. So here's our new plan, and last night it worked pretty well. When Lily falls asleep after 9:30, we put her in OUR bed. She stays asleep. The radio and bathroom light are on. When she wakes up in the middle of the night, I feed her in bed, lying down. I change her diaper if needed and pick her up to pat her back for a few minutes to calm her. She's pretty good at going back to sleep.
Here's what I don't understand. How can she go back to sleep, lying flat on the bed after eating. What about the reflux? I'm wondering if staying relaxed helps that because it's when she wakes and stiffens that the problems seem to occur.
I say all of this knowing how unpredictable and ever changing life is with Lily. It seems as if every time we think we have her figured out, she goes and changes the rules. But that's been her way from the beginning. Stubborn? Yes. It drives me crazy some times, but perhaps that stubbornness is what has kept her with us. I would have it no other way.
I have learned to appreciate even these difficult times. I've complained about Lily waking to eat every three hours. Then, I experience half of a week where she doesn't sleep until 3 in the morning. Last night, she woke every four hours to eat, and I was in Heaven! I was so appreciative of not having to stay awake until 3 am that I'd take every four hours and not complain.
I have learned that this is the most difficult time I've ever experienced. When was the last time I said that? This puts that time to shame. How much I've grown to appreciate the "easier" times.
I have learned more about generosity. . . and that it doesn't necessarily come in the form of money. As our preacher said, it's like water running through a pipe. There is a receiving end and there's a giving end. There have been so many people reaching out to us, and Dave and I have had to open our receiving end up a little more. (Apparently, we have a secret Santa!) But we've realized that we don't want our giving end closed so that others' generosity overflows. We have also opened our giving end, and funnily so, although we don't have much to offer monetarily, it feels good to give knowing we don't have much to offer.
Tonight, we finalized our Advent calendar. This year, we've created a calendar of things to do with Gabriel and the girls--in service and in fun--each day/night of the month of December. Activities range from making Christmas cookies and watching Christmas movies to making pine cone bird feeders and serving dinner to homeless people. I'm so excited about this Christmas season! Our activities begin tomorrow night with Rani, Autumn, and me watching The Nightmare Before Christmas--one of Autumn's favorite movies. (Dave has to work late.)
So much to be thankful for!


  1. It's always so nice to read an update on how Lily is doing. It is unbelievable that it has been seven months since she was born. Enjoy your Christmas with her and your family. With Love, Shannon (Oliver's mom)

  2. I am glad to hear that everything is going so well. We really miss you at Belvedere, but I know that you are exactly where you need to be right now. May this holiday season bring you all many blessings and wonderful memories!
    With love,
    Jennifer Wall

  3. Happy 7 Months Lily! What a blessing you are!
    Happy Holidays to you and your family.

    Love from California,

  4. Same with Vera, loves faces, little interest in toys. I wonder why...

    I'm just glad you're home now with Lily and she's getting all the love and care from you.

  5. So sorry to hear about these recent challenges. I've got my prayer warriors going again. God will see you all through this...I think He's still got plenty of miracles left to share : ) Blessings on you all!

  6. I tried laying a heating pad on my babies bed while I nursed her and then removed it and placed her on the bed. The warmth helped her stay asleep.